{"id":605,"date":"2017-04-04T16:25:53","date_gmt":"2017-04-04T20:25:53","guid":{"rendered":"http:\/\/www.silvercentury.org\/?p=605"},"modified":"2018-07-13T07:51:30","modified_gmt":"2018-07-13T11:51:30","slug":"the-home-care-revolution-is-family-care-on-the-way-out","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2017\/04\/the-home-care-revolution-is-family-care-on-the-way-out\/","title":{"rendered":"The Home Care Revolution: Is Family Care on the Way Out?"},"content":{"rendered":"

A sea change is underway in long term care. To tackle this important subject, we bring you a three-part series of articles on the future of home health care. Part One explains why, in years to come, fewer elders are likely to have live-in, hands-on help from family and friends. Journalist Barbara Peters Smith wrote this series as a John A. Hartford Foundation Journalist in Aging Fellow, participating in a broader fellowship program supported by New America Media and the Gerontological Society of America. This article first appeared in the Herald-Tribune (Sarasota, FL) in May 2013 and is also posted at the New American Media website. It\u2019s reprinted here with permission.<\/em><\/p>\n

First of Three Parts<\/strong><\/p>\n

He rinses her feeding tube and hands it to her; she shakes it dry and attaches it to a port on her abdomen as he dissolves three pills in water. Chuck fetches her liquid lunch as Rosalie places a plastic receptacle in an ingenious homemade stand that Chuck fashioned from PVC pipe and an old battery charger, weighted \u201cwith imported stones from the front yard.\u201d<\/p>\n

He pours in the solution, and as she feels it flow into her belly, she smiles\u2014the same glorious, sunny smile he first noticed back when they worked at Venice Regional Medical Center. He chases the meds with a can of liquid nutrition Rosalie must have five times daily, filling the tube and responding to her prompt when it\u2019s time for another pour.<\/p>\n

Usually, as Rosalie finishes her meal, Chuck gets himself something to eat and they sit together at the dining table. Then they stand, every single time, for a long, satisfying hug.<\/p>\n

It\u2019s a process they repeat about every two and a half hours, with two more feeding sessions for medication alone.<\/p>\n

Early in the day, it looks easy. But, Chuck admits, evenings are tougher because his energy flags.<\/p>\n

The traditional American model of home health care is rapidly fading away.<\/p><\/blockquote>\n

The Schockweilers have been married for 14 years. At 66, she has lived for a year and a half with amyotrophic lateral sclerosis, an incurable erosion of the central nervous system that\u2019s also known as ALS, or Lou Gehrig\u2019s disease. And at 71, he has endured countless rounds of chemotherapy for liver cancer.<\/p>\n

Rosalie took care of Chuck when his chemo side effects were most debilitating. Now, he says, it\u2019s his turn.<\/p>\n

\u201cWe both have a terminal illness,\u201d he says. \u201cWhoever lives longer, be that as it may. I don\u2019t know; it will work out. We\u2019re just hanging in there.\u201d<\/p>\n

The Schockweilers, like many older couples with health challenges, are determined to stay out of a facility and in their own home as long as they can. But what sets them apart from many retired Floridians\u2014aside from their determination to keep laughing, joking and visiting the occasional tiki bar\u2014is the tight network of people willing and able to help.<\/p>\n

Rosalie\u2019s good friend comes by often to take over feedings so Chuck can run errands or work on his boat. A neighbor cuts their grass. Daughters, sisters and church members stand by, along with a close-knit community of fishing buddies, retired police officers and firefighters.<\/p>\n

This is the traditional American model of home health care, and it is rapidly fading away. <\/p>\n

\n

The Home Care Revolution, a three-part series, by Barbara Peters Smith:<\/strong><\/p>\n

Part 2: Strangers in the Home<\/a><\/strong><\/p>\n

Part 3: Are Robots the Answer?<\/a><\/strong><\/p>\n<\/div>\n

A New Work Force<\/strong><\/p>\n

Americans are living longer, meaning more health support is required for an extended time. But fewer people have access to the loving, full-time, live-in care that Rosalie Schockweiler gets from her husband. Baby boomers have higher rates of divorce and childlessness than their parents\u2014raising the prospect that there will be fewer family members to care for them.<\/p>\n

Long term care specialists agree that helping elders with care in their own homes could be more cost-effective than institutionalization\u2014and it is what most older Americans prefer. But no one seems to know how the home care alternative would work on a larger scale.<\/p>\n

A home care revolution\u2014with extended stays at facilities such as hospitals and nursing homes diminishing\u2014could be daunting, personally and financially, for many working people who struggle to care for aging parents. It would mean an enormous\u2014and enormously bureaucratic\u2014step beyond asking the nice lady down the street to look in on Mom while you\u2019re at work.<\/p>\n

Private-duty aides and home care agencies are expanding nationwide to pick up the slack from what has been a loosely organized, almost spontaneous approach to elder care by family and friends. Government-funded programs are scrambling to design networks that make use of this work force, with the goal of paying less than nursing homes or assisted-living facilities would charge.<\/p>\n

The rise of for-profit health care providers is no accident; 78 million US baby boomers are poised to become consumers of these services. Already, some 45 percent of Americans over 65 live alone.<\/p>\n

Last year the Franchise Business Review named home health care one of the top five most lucrative franchises in the nation, with net profits averaging 12 to 15 percent.<\/p>\n

The industry is a major source of new jobs, with an estimated 54 percent of the nation\u2019s four million direct care workers employed in home and community settings. By 2018, this share is expected to rise to 66 percent.<\/p>\n

Friends and relatives are doing the work of highly trained health care providers: giving injections, doing wound care\u2014doing things that make nursing students tremble at first. <\/p><\/blockquote>\n

But the rush to capitalize on this market could offset a crucial element that has made aging in place at home a less costly option than nursing and assisted living: a force of more than 66 million unpaid caregivers who do their demanding jobs out of love or obligation alone.<\/p>\n

In the move to professionalize a largely informal\u2014sometimes desperately improvised\u2014process, elder care specialists say, some important questions aren\u2019t being raised.<\/p>\n

\u201cWhat do we want to put in place? Do we want high-quality, person-centered care? Do we really want to make a difference to overburdened family caregivers?\u201d asks Dorie Seavey, director of policy research for the Paraprofessional Healthcare Institute. \u201cOr do we want women quitting their jobs because we have such a poor infrastructure to support their efforts to help their loved ones?\u201d<\/p>\n

Larry Polivka, executive director of the Claude Pepper Center at Florida State University, which studies aging issues, is skeptical about an emerging effort to enlist health maintenance organizations\u2014as Florida is doing\u2014in the business of elder care without more evidence about what works.<\/p>\n

\u201cI\u2019m not saying for-profit HMOs can\u2019t do the job,\u201d he says. \u201cBut we need to have in place more comparative models so we can contrast and compare and decide what\u2019s best. Instead we\u2019re just rushing pell-mell in one direction or another, depending on which way the wind blows\u2014ignoring the fact that this is going to be one of the hugest issues over the next three decades.\u201d<\/p>\n

But Bruce Chernof, president of the SCAN Foundation\u2014a California nonprofit that promotes aging with dignity and independence\u2014believes the home care revolution can result in a better quality of life for the next generation of elders.<\/p>\n

\u201cThe challenge is to not medicalize the entirety of someone\u2019s life,\u201d he says. \u201cHow do we build a new system that interacts with the medical system but allows people to have the functionality that they want, as opposed to being framed as a hospital patient?\u201d<\/p>\n

Steep Challenges<\/strong><\/p>\n

The federal government is lined up solidly behind this goal, funding an array of experiments in diverting frail or cognitively impaired elders from traditional end-of-life care at nursing facilities and trying to make it possible for them to survive with assistance at home.<\/p>\n

\u201cAll Americans\u2014including people with disabilities and seniors\u2014should be able to live at home with the supports they need, participating in communities that value their contributions, rather than in nursing homes or other institutions,\u201d Health and Human Services Secretary Kathleen Sebelius said last year.<\/p>\n

But it is a long way from \u201cshould\u201d to \u201ccan.\u201d The cobbled-together care plans that families devise to handle a health crisis\u2014subsidized heavily with their own labor\u2014may not translate easily to government-funded systems operated by an array of for-profit service providers.<\/p>\n

The challenges are steep:<\/p>\n

\u2022 Aside from promising pilot projects, few states have shown real progress in setting up viable, large-scale, home care networks that offer quality care and realize tangible savings.<\/p>\n

\u2022 The dollars available for elder care won\u2019t just be stretched thin as the baby boomers age. The total amount of funding available is almost sure to be sliced as the \u201cGreatest Generation\u201d leaves the stage and numerous boomers begin to draw on their entitlements.<\/p>\n

\u2022 Professionals in the home care field predict that families will continue to bear a larger share of the burden\u2014in dollars where possible and in hands-on availability where needed.<\/p>\n

For unpaid caregivers, quitting or scaling back their jobs can seem like an expedient, less costly way of making sure they meet their family obligations. But they should think long and hard before taking such a drastic step, according to research by the MetLife Mature Market Institute. An institute study of more than 1,000 family caregivers over the age of 50 found that the lifetime effect of lost wages, Social Security benefits and retirement savings comes to more than $300,000 for the average caregiver.<\/p>\n

In trying to make sure a parent or spouse is safe and comfortable, says MetLife Institute research director John Migliaccio, it can be easy to make a decision that may prove devastating financially. About 25 percent of all adult children in the United States are responsible for the well-being of an older relative, he says, and the cost of their dropping out of the work force came to $3 trillion in 2008 dollars.<\/p>\n

\u201cThat\u2019s a significant economic impact that goes unrecorded,\u201d he adds. \u201cPotentially, the costs are much higher.\u201d<\/p>\n

Meanwhile, little attention has been paid to the growing medical sophistication of what family caregivers are being asked to do, says Susan Reinhard, vice president for public policy at AARP.<\/p>\n

According to the organization\u2019s 2012 report, \u201cHome Alone: Family Caregivers Providing Complex Chronic Care,\u201d these unpaid friends and relatives are doing the work not of personal aides but of highly trained health care providers.<\/p>\n

\u201cMore than half of them are giving five or more medications, and more than 25 percent are giving 10 or more injections,\u201d Reinhard says. \u201cAbout 35 percent of them are doing wound care, sterile dressings, colostomy care. These are things that make nursing students tremble the first time they do it. And here we\u2019re saying, \u2018Go home and do this to your mom.\u2019\u201d<\/p>\n

Priceless Care<\/strong><\/p>\n

It would be hard to calculate the value of care provided in homes like the Schockweilers\u2019.<\/p>\n

Rosalie\u2019s voice is nearly gone; she relies on her expressive face, lively hand gestures, pen and paper and an iPad to make her point.<\/p>\n

\u201cI believe God put us in each other\u2019s life for a reason. We take care of each other, and our weakness makes us strong,\u201d she writes on lined, yellow paper. \u201cWe don\u2019t understand how people cannot believe in God. It is amazing how I can help myself, and all the things I still do.\u201d<\/p>\n

Rosalie, an ex-New Yorker, and Chuck, a retired police officer from Chicago, know that all the care routines they improvise are temporary\u2014that Rosalie will lose the ability to control her arms and legs and will need more assistance. And Chuck might not have the strength to offer it.<\/p>\n

But they plan to carry on, Chuck says, \u201cas long as possible. I tell my buddies, \u2018When I go, I want to check out in my La-Z-Boy chair.\u2019\u201d<\/p>\n

He wants them to strap him in, put the chair on his boat and light it all on fire, \u201clike a Viking,\u201d out in the Gulf of Mexico.<\/p>\n

He and Rosalie laugh, clearly more comfortable talking about the hereafter than the here and now.<\/p>\n

\u201cOnce they tell you you have a terminal illness and you adjust to that, it\u2019s easier to deal,\u201d Chuck says. \u201cYou can kind of joke about it.\u201d <\/p>\n

\n

\"\"Barbara Peters Smith writes about aging for the Sarasota Herald-Tribune and edits its weekly Health+Fitness section. A graduate of Northwestern University\u2019s school of journalism, she was an editor at newspapers in California and Florida until she decided at 55 to return to reporting to challenge herself professionally. She has two adult children, a poet and an artist.<\/p>\n","protected":false},"excerpt":{"rendered":"

He rinses her feeding tube and hands it to her; she shakes it dry and attaches it to a port on her abdomen as he dissolves three pills in water. Chuck fetches her liquid lunch as Rosalie places a plastic receptacle in an ingenious homemade stand that Chuck fashioned from PVC pipe and an old battery charger, weighted \u201cwith imported stones from the front yard.\u201d<\/p>\n

Read more The Home Care Revolution: Is Family Care on the Way Out?<\/span> ›<\/span><\/a><\/div>\n

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